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Dear Jeremy Hunt,
I hope you don’t mind me sharing this online rather than in writing, but I don’t have time to go the Post Office.
I am doing an experiment called ‘Life’ and I would love to get your input for my thesis.
Say for example, your mother, or daughter or sister or wife – anyone you love dearly – had a history of stomach cancer in the family.
Twelve months ago they developed a simple infection which was treated. But Google “H-pylori” and the first thing the internet will tell you is that it’s a precursor to stomach cancer.
Would you have listened to the GP when your mother, (daughter/sister/wife), kept complaining of eating problems and losing weight but the GP said, ‘Don’t worry, it’s nothing sinister’ ?
I guess you probably would the first time. Of course you have faith in your doctor, ‘they know more than anyone’, you think. ‘Trust them not Google!’
But what if her symptoms kept getting worse? And every time she went back, she kept being told, ‘Well it’s probably IBS/indigestion/the gut is reactionary to emotions – you are probably stressed, just go for a swim’.
Wouldn’t you start to worry, after six times of being sent home with a diagnosis of ‘nothing sinister’ even though the holes in your loved one’s belt running out are telling you otherwise?
Would you encourage her to go see the GP one more time and just push for a colonoscopy, even though the GP insists it’s not necessary?
Finally she agrees and signs the form for the referral. That’s all is needed, just a tiny little biro squiggle.
It’s only a three month waiting list, April 17th – that’s not too bad, not long enough to warrant another appointment but not quick enough to be eased. She can distract herself by doing DIY colonic irrigations in the bathroom, try and get some relief from the constant pain in her tummy. You can buy them really easily on Amazon and they arrive the next day.
Then, April 13th you get a phone call to say it’s not a colonoscopy, it’s just an appointment with a nurse to see if you warrant one. What? But you waited patiently. It’s admin you see, Jeremy, it’s really important. The NHS has loads of paperwork, it’s ‘only there to protect you!’
So April 17th. Ah slight problem, the nurse won’t grant a colonoscopy because it’s not an urgent case. Your mother, (daughter/sister/wife), starts crying and saying, ‘How sick do I have to be?’ The nurse simply replies with, ‘Well there are people who are bleeding and you are not, sooo.’
Would you try and save up cash to get her a private appointment? Scrap that, too late, she is sweating after just one teaspoon of soup. Best take her to A&E. I know, I know, this is not an accident and it’s not an emergency, but the GPs aren’t listening and sweating to soup is a very strange reaction.
The department runs the tests, thank God they keep her overnight. Finally someone is listening. What a relief!
Admitted and on the ward, a team of strangers rally around her bed like a swarm of ants as they pull the curtain round to give you the news. It’s inoperable stage 4 stomach and bowel cancer.
Would you question them or would you hold on to hope because they have assured you that she only has to wait two more weeks for tests and three more after that for treatment. ‘Don’t worry the tumour won’t grow, go home with the feeding tube and some Calpol, any problems, just call 111’. The main one left and the little ones all followed.
Well that can’t be that bad then can she Jeremy, if she can wait several weeks and they have only prescribed Calpol?
I mean that’s what they give to babies.
It’s 2017, you tell yourself, people survive cancer all the time!
She is much happier in her own bed, no noise or bright lights to keep her awake. Just sudden jolts of pain that make her writhe in her pyjamas. Don’t panic, remember what they told you. Call 111 and wait for the radiotherapy appointment.
On-call GP comes out and leaves a prescription for liquid morphine. Great. But leaves you with no means of getting into your mother’s (daughter’s/sister’s/wife’s) feeding tube. Crap.
What do you do? Time is of the essence. You can’t go to her GP, she misdiagnosed her and has since sent the wrong prescription FOUR times and to change doctors now would take a week of admin. Instead you have a choice, seek out alternative medicines such as cannabis to help ease her pain or trust the system, just turn the music up so you don’t hear her screaming.
Okay moving on, it’s finally time for radiotherapy. Back at the same hospital you see a different doctor, he doesn’t have very good bedside manner and just talks at Mrs (insert wrong name here), but your mum isn’t very responsive to him. Hardly surprising, he hasn’t got great chat skills. But maybe he has good drug ones? He orders a knock out dose of morphine so she can get in the ambulance and manage the 50 minute journey to treatment.
Phew, finally you pull up into the car park! It’s going to start getting easier now, because treatment is about to commence. Wait. Scrap that. Radiotherapy annihilates a person’s immune system. My bad. Okay so it IS going to get worse, but then it’s going to get better. That’s what all the professionals are telling you. SO it’s important to listen!
At the centre, the new doctors take one look at her and say she’s unfit for treatment, send her straight back for palliative care.
Who would you be more annoyed at Jeremy, the doctor who drugged her up and sent her here, or the doctors here who are sending her back? What would you do? I guess all you can do is hold her hand in the back of the ambulance as they blue light her back to hell.
Hospitals aren’t nice places and the wards are so understaffed, best if you run in first and clean her room with a wet wipe and get rid of the dirty sheets. Tuck her back into bed, the trip has exhausted her. But as soon as she wakes up, she wails in agony and it’s heartbreaking to hear.
If you were at home, you could just give her some weed to calm her down, but you can’t here so you just press a button and wait. And wait. And wait. Hopefully she will forget this 45 minutes of wailing even if you don’t. Wouldn’t you just want to get her home?
Would you resort to tweeting to try and get some help? Or would you just call your mates and ask them to push this one forward to the front of the queue, ask them to be gentle with her, and patient and kind, but speed things up so she has a chance, maybe not at a long life, but at a good quality of one? After all she’s spent a lifetime paying her taxes.
Or would you trust the system and do what they all told you. Even though, they got it catastrophically wrong time and time again. Would you quit working to become her full-time carer because there is not enough care on hand?
Would you rub her tummy as the tumour in the bowel slowly eats its way across to the stomach and forms a fistula. A tunnel. Would you hold the sick boat (as she likes to call it) as you watch her bowel empty through her mouth? Would you comfort her while trying to close your eyes and beg for this image to not singe into the depths of your subconscious?
You would do everything in your power to help her. Euthanasia is in your power, but you can’t do that. It’s illegal. It’s inhumane! This is God’s way, they say. The system is in place to protect you. You have to trust the system, I mean this is England, it’s 2017 for goodness sake!
Have you ever heard of ‘Terminal Agitation’, Jeremy? It often happens to people who are younger and aren’t meant to die yet. It’s where the person’s mind is healthy and well but is aware that their body is deteriorating, so as much as they try to fight it it, the battle becomes harder, they get agitated, confused, distressed, pushing loved ones away and trying to pull out tubes that keep them hydrated. When it comes to that point, it’s kinder to just sedate them. Just keep them very heavily sedated until their heart stops working.
It’s difficult though, especially if they have a strong one.
So I guess my question is: what would you do if you were in my situation Jeremy? I’m sure you have the money and the connections so it’s easier to access what you need. If you didn’t though, would you do everything in your power like I have? Would you do everything and anything that you could possibly think of to repay the love and kindness she has spent a short lifetime showing you?
The only currency I have is social media, but maybe that’s not powerful enough to make a change. I would like to think if you were me, you could do more than post a status about it. In fact I guess that’s why I am trying to bring it to your attention, because if you were me, you would have the influence to never let it get this far in the first place.
Click here to donate to help Luisa’s mum as she deals with cancer and support the hospice she’s staying in
This post originally appeared on Luisa’s Facebook page